When I was 12, I found myself sitting in a consultation room in front of a doctor I had never met before.
The doctor asked, “What would you like us to do if you end up on the breathing tube after this operation?”
It was a difficult question and it terrified me. But that was not my first experience with surgery – even at the age of 12, I was a veteran.
I have already had more spine and brain surgeries than I could count, due to early diagnosis spina bifida, a neural tube defect that meant my spinal cord failed to develop properly. This put pressure on my brain and spine which would cause weakness in my limbs, headaches, back problems and fine motor skills.
By the time I was 18, I had several more surgeries related to my initial diagnosis and unrelated gallbladder removal that interrupted my final year of high school.
I felt like my body was no longer mine – full of scars and imperfections.
About that time, my sister made her first tattoo: a snake on her leaf. She was about 24 years old, and I was so interested in the process that I went with her.
When I entered I immediately fell in love. The salon was covered from wall to wall with works of art of American traditional tattoo design. Six or more artists were huddled over the clients, and the buzz of their tattoo guns was almost deafening. I remember thinking the ink smelled of caramel, and there was a friendly, easy joke among the clients and artists. It was amazing and I immediately wanted my own tattoo.
I soon decided. I was only 18 and my mom was skeptical, but I think she saw the value before me in making this initial, lasting change in my body.
“You’ve had so many surgeries you didn’t want to; I’m not going to stop you from making this choice,” she told me.
The tattoo is a black and red mandala on my inner biceps. I looked at hundreds of pictures of mandalas before deciding on the design I wanted. At the time, personally, the tattoo had very little sentimental meaning, but I liked the idea of mandalas. Something that, in some cultures, would be worked on for hours in the sand, only to be wiped out in an instant. I recognized the irony and mine would be permanent.
I remember sitting down for it and expecting pain. My history is welcome here, because due to previous operations, I have very little feeling in my hands. All I felt when the tattoo artist started was a slight sting. When it was over, I looked in the mirror for a long time, admiring this new addition to my body.
The return of my body’s autonomy
I haven’t finished 12 yet and I remember proudly parading my first tattoo at school. One teacher even asked if it was real. It gave me a feeling of firmness, strength.
The connection between the tattoos and my trauma was not immediately established later, and after many more pieces – bear, knife and rose, fortune teller, the list goes on.
I finally felt like I had done something to regain body autonomy and I no longer felt just a victim of my previous traumas. I had these badges of honor proving that my body was mine. More than just a collection of operations.
Corey, 45, of Kensington, Melbourne, lives with cystic fibrosis and shares a similar experience as mine. Corey’s medical history includes a lung transplant and two kidney transplants. He sees some of his 10 tattoos as a rebellion against doctors telling him what to do with his body.
“When you have a chronic illness, you say what you can and can’t do all the time,” he tells me.
“I had a friend who also made a couple of tattoos for himself. And I said, ‘Well, why not [me]’? “
His first tattoo was one of his favorite Marvel superheroes, Sunfire.
“Now it looks like red and yellow are all crushed together,” he says. “You know, it’s pretty close to 30 years.”
After a lung transplant, and doctors told him that he should no longer get a tattoo because of the risk of infection, his tattooing started in earnest.
“It definitely gave me that feeling, well, this is what I want to do with my body,” says Corey.
“I will not allow my body to tell me what to do, nor the doctors [tell] what do I have to do.
“Like everyone with someone who has a chronic illness or disability, I tend to do things with a level of calculated risk. Look at something you want to do, will it really affect you? What are the worst consequences? How likely is it? does that happen? “
‘More than simple aesthetics’
I am now 26 years old and have 15 tattoos. There are some that mean more to me than others. The two I especially love are the red flowers on both my hands.
For me, my hands were just a cause for frustration. Unable to perform the simplest tasks, such as buttons on a shirt or holding a signature pen. These flowers, the most visible of all my pieces, now represent beauty to me and help me come to terms with my limits, while at the same time understanding that I am more than the things I can’t.
I also have a few who are connected to my family – a heart for my mother, who supported me during my medical journey, as well as a pelican in memory of my late grandfather.
But I believe my tattoos are more than simple aesthetics. Being able to watch them every day reminds me that it’s my body and my choice of what will be on it, instead of the many scars and limitations that weren’t my choice.
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